October 25, 2012
A week in the Haughton House
The last while Tim and I have been noticing a decline in Joshua's over all health, frequently Josh has told me that he's 'tired all the time' or needs 'a big sleep' or just plain old 'I tired a lot'. This past weekend I finally wrote to our cardiologist and filled her in, the plan was simple. An ECHO. So we set up an ECHO for the 31st of Halloween and would have to wait until the 14th for the results because our Doctor was away.
That was Monday morning. By Monday night Josh was so sick with a cold and cough and fever that we thought he had pneumonia, now we had already had Josh booked in for an MRI Tuesday morning, so we had babysitting already worked out for Kaleb, but come Tuesday morning the MRI lab called and reported a broken machine and I packed Josh into the car and headed to the ER instead. Once there we had a chest Xray and ECG and a battery of swab tests (none of which were pleasant for little man) but nothing was too far out of whack. He was wobbly and unsteady but was showing no serious signs of heart failure and his lungs were clear of pneumonia so were released and asked to follow up with both stroke team and his cardiologist. By the time I got him home that night his fever was back up to 104.
Now, at this time Kaleb began to cough (as one does when his brother has been hacking all over him for a number of days) but as we know Kaleb's lungs are not stellar and his coughs always turn asthmatic in no time at all. On Wednesday morning I had an already planned clinic appointment for Kaleb in the respiratory clinic to have his asthma finally diagnosed. Between the parking garage and the hospital main lobby Kaleb had thrown up four times. Tiggy (for those of you who have not had the pleasure of meeting Tiggy... it's Kaper's security 'doll'... count your blessings.) Tiggy, became utterly useless to us as he was covered in vomit, as were his clothes, and his blanket. I found him a hospital gown, got his chest xray and headed to the clinic.
Briefly let me explain the layout of this clinic.... it's in 4A... which also happens to house the cardiac clinic. So while I was waiting for Kaleb's appointment I checked in with the clinic to double check the time on the ECHO so I could finalize babysitting for the day. We chatted a little bit and finally she said, if I had known you were going to be here today I could have gotten you in today and then you could have seen the doctor on the same day. (I have to admit here that I literally jumped all over that)... I said quickly (probably too quickly) 'if you can make that happen I can get Josh here'. So she smiled and said she would ask the doctor and come find me in the asthma clinic.
When I took Kaleb into see the doctor he was pretty ill, in fact, I should have just taken him to the ER, instead this expert in childhood asthma listened to him and ordered O2 and a ventillian mask. As the nurse game him the meds she began to explain asthma to me in a way I had never heard before. She made me understand the medicines and the purpose of those medicines, the symptoms and what symptoms are saying 'ER please'... by the time she stopped talking Kaleb had perked up a little and she sent us home without the ER visit this time, but with the ER medicine that would help him if we needed it, or if he got worse.
As we were leaving the clinic I was met by the Cardiac nurse who said that she had indeed managed to get us a spot for the afternoon so I quickly called Tim's parents and asked them to switch kids with me. Within 20 minutes we were at the main doors of Sick Kids trading kids and medicines.
Josh fell asleep as soon as the ECHO started, and didn't wake up until I was 90% of the way through my chat with the doctor. This in itself was an answer to prayer since I know how scary all these words and tests can be for him.
Basically, the ECHO is showing no crazy changes in his heart, but she isn't surprised that he's showing signs of decline, ('he has a bad heart') as she reminded me when I tried to pass it off. The reality is that as he grows, as more is demanded on his body, his heart is struggling to keep up. The options are limited. However, before we do anything drastic she is going to give him a medicine which will help take the fluid load of his body and give his heart an easier go of it. We will know quickly if that is something that is working, (this is something we need to pray hard for.... that it works and buys Josh lots more time). In January the doctor will see us again, if more decline has been noted then we move to discuss something called the Fontan procedure ( a shunt to help ease the load on his tricuspid valve). It's an open chest surgery, but she thinks it may be possible to do without bypass. This fix is not something that we can change, it will permanently change the make up of his heart, (which I suppose isn't a big deal given the damage already done to his heart) but it also has side effects, swelling, possible headaches... not to mention yet another open cavity surgery and possibly another by pass. The third option, the one no one wants to even talk about yet because the risks are too high, is that we just replace the tricuspid. This is not really an option right now, it's just too risky for him.
So, this is a lot of information for one blog post... I have some sick kids. I'm exhausted and I think in part I am emotionally numb. It's why those of you who have asked for an update are getting it via a blog post. With two sick kids and one really tired Mum this is the best I can do right now.
I do have to end with saying thank you for the prayers this week. I know there have been many said for our family and I have really truly felt those prayers being answered. From the broken MRI to the last minute ECHO. Thank you so much for remembering us, for caring and taking the time to pray.